Friday, February 24, 2012

Recently, I had my physical therapist tell me that being a cancer survivor is one of the hardest phases of the cancer journey. I was nearing the end of radiation and couldn't really understand what she was saying. I was so excited to wrap up radiation and start moving away from the treatments, it consumed most of my daily thoughts.

Now that I am done with radiation, I understand the problem. What is there to consume my daily thoughts now? I can fixate on what is happening in my body; are all of the microscopic pieces of cancer gone? Will my immune system step up to the plate and stay strong? Can I focus on living this year and being a wife and mother and daughter and sister and friend?

I found this article on Livestrong.com. It really articulates how I am feeling and some of the feelings that Brian is going through. This article was written by Mary Elizabeth Williams and posted on Salon.com.

Of all the possible outcomes one could have after a diagnosis of metastatic, Stage 4 cancer, I have had the best. Last month, my doctor told me the tumors in my lungs and under the flesh of my back — after months of treatment in anexperimental, Phase I clinical trial — had disappeared. And now, having endured surgeries and side effects and weekly monitoring, I can, with my last regular treatment mere weeks away, begin preparing for the rest of my life. Yet when my friends ask what we’re doing to celebrate, when they high-five me and ask, hopefully, “So now it’s over, right?” I don’t know what to tell them. I don’t know how to explain why I don’t feel yet like partying.

I’d thought I would. Months ago, when the treatment was just starting and my fate was uncertain, life without a flurry of infusions and blood work seemed unimaginable. That was around the time my friend, the writer Anne Stockwell, wrote to say that she was planning a Web community called WellAgain. “We cancer cases get amazing and heroic care during treatment,” she wrote, “but after is when the emotional hammer hits, and somehow after is exactly when we find ourselves alone again.” The name, she explained, “refers to the fact that cancer never gives you the certainty that you’re well again. So you have to decide what well again is for you.”

Anne understands that feeling all too well. She has been diagnosed with ovarian cancer three times and describes herself now as a two-year “cancer survivor who hates the word ‘survivor’.” She prefers “cancer veteran.” “I think of myself as someone who went to that war and came home,” she says, “and was lucky to not to be too grievously injured.”

Here in the homestretch, I can almost start to see myself that way too. I used to keep a keen eye toward March 15, like a child waiting for Christmas. I eagerly imagined the bright new world of improved energy and fewer afternoons tethered to an IV drip. But now, like many who’ve been in this very fortunate position, I find myself approaching this milestone date with both indescribable relief and gratitude — and a fair amount of other, surprising emotions as well.

There’s the fear, of course. My treatment schedule has been working well just like this. It’s saved my life from shockingly dire odds. What happens when the protocol changes? The hope with immunotherapy is the body will continue to fight off cancer cells, but there’s something pretty comforting about watching the drugs go in and knowing that they’re doing the fighting for me. This is the beginning of finding out how much my body can do on its own. It’s not exactly flying without a net, but it does represent a different and scary level of autonomy. As Anne puts it, “I’d been pumping my guts full of something to fight cancer — now what? I was quietly afraid for a long, long time.” And my friend Martha, a therapist who had breast cancer two and a half years ago, likens the end of chemo to when she had her first child. “I was in the hospital after a Caesarean,” she says. “Of course I wanted to go home, but when they discharged me, I remember bursting into tears and thinking, ‘It’s all on me to do this now.’”

Until that day comes for me, I’m still living in a body that feels like crap a lot of the time. And the side effects, cumulative and intense, of cancer treatment don’t melt away the moment the nurse unhooks the drip. In fact, the treatment itself often doesn’t even end then. There are maintenance drugs and infusions, often stretching on for years. In my case, I’ll move to a schedule of treatments every three months that I hope will continue to do the job. And while I likewise hope for my energy to return and my rashes and dizzy spells to go away, I don’t expect that to kick in by happy hour on March 15.

At least the dread of recurrence and the ongoing struggles of side effects are the kinds of things that are easy enough to explain to people. But there are other aspects of wrapping up an initial course of treatment that are harder to discuss. There’s an oddly sad element to it, and an often-awkward identity shift. It’s almost like a graduation – there’s the sense of accomplishment and anticipation, but it’s mixed with a strong loss of security. Ending regular treatment means the reassuring, friendly doctors and nurses who are right now a near constant part of my life will become less frequent participants in it. Similarly, I will have to begin transitioning out of my weekly cancer support group; I’ll have to prepare for the Tuesday night that it will not include me. I’ll be so grateful to no longer be an active patient, but I’ll miss the updates and stories, the camaraderie and humor. Sure, some of us will keep in touch. But you know what it’s like when you leave a place, even for happy reasons.

“A lot of people go into depression when treatment is over,” says Martha. “I felt a little bit lost after treatment. People shore themselves up to get through it. It takes everything in you to cross that finish line. But I had had a lot of good things that had come up from treatment — I’d started writing music, and found I had a gift for it. There was a lot of hope then. It’s taken time to really learn how to take care of myself in a new way and live again.”

That’s why it’s bittersweet to move on to the next part. “I think there’s a huge rush of the tide to get you back as though nothing happened. To reassemble the picture that you had before,” says Anne. “People think that must be what you want, you must want to forget this. The big mistake is that it’s forgettable. Or that there’s an end to it. There’s no end to it.” And as Martha says, “The doctors will say, ‘Oh, you’re good. Go enjoy your life.’ But you don’t stop having had cancer once treatment is over.”

Cancer is part of me now. It’s part of all of us who’ve experienced it, whether we call ourselves survivors or continue to grope, as I do, for a word that makes sense of this new place. How can I call myself a “survivor” when I will spend the rest of my life monitored and tested, a veteran who knows all too well that another deployment could be as close as the next CT scan? We cancer vets live daily with our cancer — in the scars on our bodies, the memories of the people who were kind when we needed help, and the way that we can never again take for granted what a gift it is to make plans.

This President’s Day, I am getting a CT scan. On Thursday, I will go back to Sloan-Kettering for my penultimate regular treatment. I’ll come armed with a freshly squeezed orange juice I got at the Jamba Juice around the corner, as I do each time. I’ll sit in my suite and watch movies on my laptop. I’ll probably cry when they try to draw blood, because my veins are shot to hell. I know the drill. Will I miss it? No. But I’ll miss the security of it; the purposeful sense of being so actively engaged in the job of killing cancer cells. I’ll miss the regular engagement of my medical team and my support group, who I’ve come to regard as good friends. I will no longer be a full-time patient. I won’t be my old, pre-cancer self either. I’ll miss those old selves, even the one with the life-threatening cancer. She was one tough broad. I will be someone different after March 15, and that’s scary and strange to contemplate. Fortunately, it looks like I’ve got the rest of my life to figure out who she can be from here on in.

What made the most impact on me is that I have to figure out who I am as a person who HAD CANCER. And Brian and I have to figure out what our relationship is like is post-cancer. Our idyllic relationship was hit with a train six months into marriage - now I think we are recovering from the train wreck. Both of us are walking away a little bruised and bloody, but the point is, we are walking away. After all that we have been through this year, Brian and I finally have reached the point where we can start planning for our future again. I think 2011 was a year for me to overcome my fear of dying. 2012 is a year for me to overcome my fear of living.

Tuesday, February 7, 2012

Disclaimer: I want to be sure that everyone who reads this blog realizes that I have the most amazing husband who I am completely in love with. Brian is supportive, brilliant, kind, generous and thoughtful. I find him devastatingly handsome and love how he treats me. This blog has nothing to do with our relationship, but a mere observation of the relationships I have observed. I love you, honey. Even though you make me batty, sometimes.

I was driving to the gym this morning and heard Christina Aguilera's song "Can't Hold Us Down". It's an older song and I hadn't heard it in awhile. But some of the lyrics stood out to me:

This is for my girls all around the world,

Who have come across a man that don't respect your worth.

Thinkin' all women should be seen not heard,

So what do we do girls, Should Out Loud!

For some reason, this made me think of Alicia Keys song, "Superwoman".

For all the mothers fighting

For better days to come

And all my women, all my women sitting here trying

To come home before the sun

And all my sisters

Coming together, say yes I will

Yes I can

I am sure there are hundreds of other songs that are talk about girl power and being women that roar. But I got to thinking about the plight of women. My last blog spoke about some of the strong women in my life and their ability to juggle so much. But it goes deeper than that. It speaks to the fundamental structure that women provide in society and in the household.

Let me share my story. I am back to work after taking six months off in 2011 to have my first child and deal with my cancer treatment. I just finished radiation less than a month ago and am still being treated with chemotherapy every three weeks. At home, I am not only dealing with an 8-month old that still doesn't sleep through the night, but 50% of the time, I have Gavin and Cohen at our house and deal with the routines of an eight and six year old. So yes, my husband works. And yes, he also has three children to take care of. I can clarify the differences though.

Valentine's Day is coming up. This means I will come up with fun and creative ways to celebrate with the kids and have a gift for each of them. It means I reached out to both of the boys' classroom moms and found out what I could bring and when party volunteering started. Then it's time for February birthdays - my mom's, Brian's, Brian's sister, and niece. I have shopping done for 50% of those people. I haven't wrapped any of the gifts yet. We have a birthday party for a friend's one year-old daughter this weekend. I went out and bought that gift; not wrapped yet. I had a business trip out of town last week. Instead of just packing and taking off the way Brian did for his business trip, I packed up, packed Evan up and drove him to my parents. I still got up with Evan at night and prepared for my meeting in the morning. Since it was my first meeting after being off, I wanted to make sure I was polished, professional and smart. I felt like I needed to prove myself - being a baby didn't make me lose it. Having cancer hasn't taken my drive away. I've got it all. Finished two days of meetings and went back to get Evan and bring him home. Unpacked both of us and started all of the laundry. Read Blackberry messages in between laundry. Have also decided it is very important to me to do something for other women in my circumstance - that means two meetings with different leaders from different breast cancer support non-profit groups. I haven't found exactly what I'm looking for so I'm dabbling with it all and considering starting a 501c3 on my own. On top of that, I felt like I wasn't contributing enough to the boys at school so signed myself up to be the Chairperson for Teacher Appreciation Week. Excellent.

Where does that leave me? Trying to re-establish my position at work. I have a new project I am working on for the Central Region (this territory covers Michigan, down south to Texas, west to New Mexico and east to Arkansas). It's a cumbersome project and a new role, but I like the challenge and am motivated to do well at it. Yet, this position isn't permanent and I need to keep one foot in the door in consumer banking in case I lose my temporary position. Therefore, I am working on staying relevant in the Michigan market and found myself speaking on a call this morning, volunteering to support my former peers in a space where we can perform stronger. Okay - established relevance. Established school presence. Working on gifts, wrapping and coordinating babysitters - establishing social life. Working on moving Evan's ill-fitting clothes down into the storage tote in the basement, while making sure he has weather appropriate clothes in all of the new sizes - establishing organization. Finished my last conference call today to run through Gavin's homework with him, worked on making dinner, worked on feeding Evan, worked on cleaning up dinner - establishing sanity during the evening rat race. Started out at the gym at 6:30 this morning since I set a goal for myself to run a race in May - establishing healthier lifestyle.

The thing is, I'm not that different from many other women I know. We tend to do the grocery shopping. We tend to wash the sheets and make the beds. We tend to do all gift buying and gift giving (although, Brian does make sure I have some nice gift receiving :) ) We tend to keep the social calendars, the work calendars, the medical calendars, the school calendars and the family calendars. We read the school e-mails, the personal e-mails and make sure we don't lose touch with the friends that moved away to Missouri or that we left behind in our last neighborhood. We send out Christmas cards, send letters to Grandma, make dates with our parents and double dates with our friends. It seems that most couples tend to socialize with the women's friends - the husbands come along. And that's awesome, since most men tend to get along with most men. We tend to know what is in each dresser drawer - because we fold the laundry, put the laundry away and keep the bedrooms organized. We make the doctor's appointments for kids, take them to the dentist, buy them their school supplies and make sure they have something nice to wear for Easter. We are peacemakers and tend to talk our husbands down from bad days at work (or bad days in general).

So what I've realized, is that it's not a battle of the sexes. It's just inequality among the sexes. I would love if it, if one day Brian said to me, "Remember, that it's John's birthday this weekend. I grabbed him a great set of wine glasses and the card is on the counter. Just sign your name. Oh, and I know you mentioned you needed new underwear so while I was out, I swung by Macy's and picked up a few pairs for you. I also thought I overheard you saying you ran out of your favorite lip gloss, so I grabbed that too." I would probably faint. I think I would faint if Brian even knew what my favorite lip gloss was. But I know what kind of shaving cream he likes, what his shampoo preference is, what kind of eye contact solution he prefers and what cologne he is wearing. I know which store he likes his dress-shirts to come from, how the dry cleaner should launder those dress shirts and ensure that the dry-cleaning is ready to go on Tuesdays and Fridays.

We are secretaries and micro-managers and Blackberry's and Intel Processors all at the same time. We are the nurturers, the shoulders to cry on and the inventory managers (from groceries to closets). When my mom was trying to put together a resume after being out of the workforce for 20 years, she was intimidated. All I thought was that as a hiring manager, I would love to have someone like her on my team. She is friendly, can multi-task, learns on the first try, adapts to change easily and is willing and ready to take on new things. These are things that women do every day. So, while I am continuing through my cancer treatment, trying to keep and flourish at my job at work, and raise my son to be a good man, I will also be working on Valentines and making red and white frosting for school this weekend. And I bet that 90% of you reading this will be doing the same thing.